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Saturday, March 31, 2018

A few days ago, I
was chopping an onion. While working on the mundane task, I began to ponder
various subjects.

During times of
contemplation, I tend to be a deep thinker and it takes me to a different
place. The first thing I thought about was how careless we can be in our
conversations with our loved ones. I saw two family feuds play out online for
everyone to see. Hurtful words, accusations, misunderstandings, and throwing
zingers out there for everyone to see.

Why would someone
do that? The onions made my eyes sting as I thought about how sad it was that
words could cause such a rift.

Knowing there was
nothing I could do about that, I turned a mental page and opened a new chapter
of thought. I thought about death and illness. Why did dementia find Jim? Try
as I might during my rumination, I found no answers. It’s not as if there was
something off with his thinking. Jim was a logical, deep thinker and talented
in so many ways.

Without answers, I
continued to chop the onion into bits and traveled to a different time and
place. My hate-affair with illness goes back to childhood. I never could
understand why people had to be sick or feel pain. It was a puzzle with too
many pieces for a child to put together. Even now as an adult, I still don’t
comprehend why a human body can have so much go wrong with it.

On the other hand,
when you think about the complexity of human anatomy, how can so many body
parts work in harmony? Every individual is different. Some are happy and
healthy, while others are plagued with misfortune.

My memories from a
half-century ago were as choppy and incomplete as the pieces of onion on the
cutting board in front of me. When I looked at old photos of myself, I felt
like it was a different life. I’ve changed and my whole way of life has
changed.

Now, we take photos
of everything, but when I was a kid, photos were rare. My favorite two photos
were taken when I was about five years old. I wore a cute dress and posed on
the hood of our car.

Somehow, those
pictures wound up in Jim’s billfold, and he carried them around from the time
we were dating until a few years after his memory problems began. For some
reason, those photos disappeared from his wallet, and I have no idea what
happened to them. I imagine they will turn up some day, but for now, it’s just
another mystery to think about when I chop onions.

The way people
weave in and out of our lives is another mystery to contemplate. It seems that
people who are so important at one stage of our lives vanish into the mist of time.
Some leave, others appear. No one ever replaces the loved ones who left us
behind when they moved on, or passed away. Yet, at the same time, new
friendships are formed and births allow our hearts to love again.

I chopped the onion
into tiny little pieces and thought about how it would never be a whole onion
again. It would be silly to think that it could be. The onion was forever
changed, but it was still an onion.

Chopping an onion
gave me time to ruminate about the mysteries that have perplexed me throughout
my lifetime. As I finished my task, I wiped away the tears the onion brought to
my eyes, pushed away the troubling thoughts, and snapped back into the present.

Sunday, March 18, 2018

I don’t even like
to talk before I have my first cup of coffee in the mornings. I like it hot
with creamer in it and usually drink a half cup at a time. My husband, on the
other hand, only drinks black coffee from his 16-ounce Mr. Coffee mug.

A few days ago, we
started breakfast before I’d had time to finish my first cup of coffee, so I
wasn’t functioning at my best. I had to be in town, and figured with luck, I
could squeeze in time to eat.

We routinely divvy
up the job of preparing breakfast, and my part is to pour the juice, milk, and
coffee. I was pouring juice when Harold said, “My cup doesn’t have much coffee
in it.” He handed it to me, and I grabbed the pot and poured it full. As I
headed back with the mug, it slipped out of my hand crashing to the floor.
Coffee splattered onto the refrigerator, my shirt, and puddled all over the
kitchen linoleum. Sixteen ounces of black coffee turned into a river snaking in
all directions.

Instead of crying
over the spilt coffee, I said a few choice words, wiped off the refrigerator,
grabbed a mop, and went to work cleaning up the mess.

This wasn’t my
first time to clean up spilt coffee. Jim usually made the morning coffee, even
after dementia made every small task harder. One morning several years ago, I
walked into the kitchen to pour my first cup. A full pot of coffee was all over
the counter and had spilled onto the kitchen carpet. Jim had forgotten the step
of setting the carafe on the warmer to catch the brewed coffee.

I don’t think I
cried that time, but I probably felt like it. It was unbearably sad that Jim,
the person who always made the perfect pot of coffee, forgot how to do
something he had done his entire adult life.

Jim’s morning
routine was to drink coffee, smoke cigarettes, and play his guitar. He quit
smoking a few months before I noticed he was having memory problems. That was
certainly a blessing, not just that he’d finally quit smoking, but that we
didn’t have to deal with the danger of him lighting a cigarette and forgetting
to use the ashtray.

Jim struggled to
play the guitar as his dementia progressed. After he went in the nursing home,
it wasn’t long before he quit drinking coffee.

It is only human to
cry over our circumstances when we know we can’t change them. Standing there
mourning over the past isn’t going to help or change anything. We have to grab our
mops and do what we can to put things right and move on.

I do not condone or
even understand people who deliberately hurt others. Certain people demean
others to give themselves the appearance of superiority. They may give more
credence to our mistakes than they deserve thinking it diminishes theirs. Avoid
these people when possible; otherwise, don’t let them disparage your
self-esteem.

Dwelling on the
wrongs we’ve done won’t improve our situation. No one expects perfection. We
err. We make stupid mistakes. We drop the metaphorical mug and make a mess. If
we learn from our mistakes and make atonement, we can walk in the sunshine and
avoid the shadows.

Thursday, March 15, 2018

Last week advocates from across the state of Missouri visited the state capitol. Jessica
and I traveled from Sedalia to meet with Senator Sandy Crawford,
Representatives Dean Dohrman, and Nathan Beard. We would also lend support as
needed with our fellow advocates.

It was a brisk day
and the security line was long. We worked our way through the line in time to
be recognized on the House of Representatives floor.

Our first
appointment was with our senator, Sandy Crawford. We waited in the hallway for
our fellow advocates, Crista, Jennifer, and Mindy to join us. After the
introductions, Jessica explained the importance of the Alzheimer’s grants for
respite. She explained that 110,000 Missourians have Alzheimer’s and that their
314,000 unpaid caregivers need an occasional break from the daunting task of
taking care of a loved one at home. The $450,000 grant is in the budget for the
Department of Health and Senior Services.

A survey of
caregivers show that 99% state that respite helped them to care for their loved
one at home longer. Sixty percent of nursing home residents in Missouri is paid
for by Medicaid. Respite helps 500 families, and if those families could keep
their loved ones home two months longer, it could save the state of Missouri $2
million in Medicaid nursing home payments.

Two months is a
conservative estimate. I know that having home health care for Jim made it
possible to keep him at home about six months longer. I received a small
reimbursement through respite funds that helped me pay for his care. This was
the only financial help we received, because Jim was too young for the programs
in place to help seniors.

I explained the
Structured Family Caregiver Act. This Act is designed to provide a new level of
support for Medicaid qualified care recipients. The caregiver
must provide the personal care needs and live full-time with the person who
needs the services. An in-home agency administers the program. They provide
professional support with care planning, training, monthly visits, and remote
consultations.

This pilot program
will be limited to 300 care recipients. It would provide a cost effective
alternative to nursing home care. How exciting this will be if it passes!
Family caregivers often have no experience providing twenty-four/seven care for
another person. They often don’t know what to expect or how to handle difficult
behavior.

The Structured
Family Caregiver Act needs support! We opened the door and now we want our
fellow Missourians to keep it from slamming shut. The bill sponsor, Kurt Bahr,
is about to term limit out. If this bill doesn’t pass this session, it may
never be proposed again. If this pilot program proves successful, it could well
be a new model for keeping loved ones at home much longer.

I had a lot of
family support with Jim, and I was much younger than many family caregivers. I
often wondered how older caregivers could manage, especially without family
support.

Caregiving is hard
and often life threatening. The stress of being solely responsible for a person
with dementia leads to health problems for the caregiver.

If you live in
Missouri, please write, email, or call your state representative and senator
today. It just takes a few moments. Ask them to fund the Alzheimer’s grants for
respite and to move forward with the Structured Family Caregiver Act and then
vote to pass it. If you live in another state check with your Alzheimer’s
Association public policy staff to see how you can become an advocate.

Alzheimer’s is an
equal opportunity disease. It affects Republicans and Democrats. Alzheimer’s
knows no racial or economic limits. Anyone can get Alzheimer’s and people like
you and me wind up being caregivers or being cared for by our spouses,
daughters, sons, or even grandchildren.

Until we find a
cure, we must provide extraordinary support for family caregivers and quality
of life care for those who have Alzheimer’s.

Thursday, March 8, 2018

Lately, I’ve been
having issues with autocorrect, especially on my phone. The first problem with
the phone is the small keyboard makes it easy to type a word incorrectly, and
when autocorrect fixes that, I’m happy. But too often autocorrect will take a
word that makes perfect sense and replace it with one that changes the entire
meaning of what I intended to say.

Autocorrect
problems aren’t limited to my phone; it can create havoc on my PC. A few days
ago, I was going to a luncheon in Warsaw and I wanted to know just exactly how
long it would take me to get there. That’s usually a simple task—just plug in
my home address and in the destination plug in Warsaw, MO. Except that autocorrect in its infinite wisdom kept changing it to Warszawa, Mazowieckie,
Poland. As if I could drive to Warszawa, Poland—AND get there in time for
lunch! Then, since the program was so helpful, it wanted me to install
something before I could actually get those driving directions.

I wasted precious travel
time trying to change the destination to Warsaw, Missouri, USA only to have it
changed to Warszawa time-after-time. After autocorrect won the battle, I kissed
my husband goodbye and said, “I’m leaving right now. I’ll use OnStar to find
the restaurant.”

“Set it before you
leave,” he said. Well, I’ve been down that road, so to speak, many times before.
I didn’t want the OnStar voice to direct me across town using weird streets, so
I waited until I was on the open road. The OnStar advisor plugged in helpful
directions, and I never had to leave the state, much less the country.

It’s not only electronic
devices that autocorrect, my brain does it too. Preoccupation results in senior
moments where I go to one of my usual destinations rather than where I’m
actually headed.

Considering how
complicated our brains are, with 100 billion nerve cells connected by 100
trillion synapses, it doesn’t take too much imagination to believe my brain
might do its own type of autocorrect, jumping the rails, so to speak. I
shouldn’t complain, though, because I believe my senior moments are simply a
slight slowing down and not the catastrophic confusion of Alzheimer’s.

Here’s how the
Alzheimer’s Association explains the difference between normal aging and
Alzheimer’s: Poor judgment and decision making can be a sign of Alzheimer’s,
but occasionally making a bad decision is a sign of normal aging. If you cannot
manage a budget, it could be Alzheimer’s, but missing one payment is a typical
sign of aging. Having difficulty conversing with others could be a sign of
Alzheimer’s, but sometimes forgetting a word is normal aging.

I believe
autocorrect should be renamed “auto-incorrect” especially when it refers to my
thinking. As far as electronics, it’s a battle of me against machine to see
which one of us is the most stubborn. It irritates me to have to click on a
checkmark to let autocorrect know that yes, I did mean to type “address” not
“espresso” as in “I need your address,” not “I need your espresso.”

Moment of truth—sometimes
I blame autocorrect when I slip a cog and actually type something I didn’t
intend to. You know, like one of those Freudian slips. Sometimes I might actually
need espresso just to stay alert. It seems to me that when I’m alert, I don’t
auto-incorrect nearly as often.

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Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

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Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

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Books are a print version of Linda's award-winning Blog. These books are published for the benefit of those without Internet access or who just prefer to curl up with a book rather than browsing online. If you enjoy Linda's blog posts, you might want to purchase the book for a friend or family member.

Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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I have participated in a link exchange with the Fisher Center for Alzheimer's Research Foundation. They have this blog http://earlyonset.blogspot.com/ listed in their Alzheimer's blogs.

Lindsay Nason wrote about my Early Onset Blog: "I want to thank you for sharing your powerful experience and your creative suggestions with others. . . . Your blog offers a unique and personal insight into this disease, which can be such a comfort to other members of the Alzheimer's community."

Thank you, Lindsay, for your kind words and for including the Early Onset Blog on your website.